Caroline shares her story of surviving autoimmune encephalitis

October 20, 2016

Even in the hospital Caroline, shows her fighting spirit.

“I was given the gift of survival, and the gift of having a voice to shed light on this little known disease.” From guest blogger, Caroline, who contacted AEA. We asked her to share her story. We hope her experience will spur on others in their own fight with AE.

It’s safe to say 2015 was not my year. Last January, after months of unexplained confusion, feelings of agitation, and depression, I was admitted into the Massachusetts General Hospital ICU after my parents found me having a seemingly random Grand Mal Seizure in the middle of the night. Although it is not really in my character (or that of my very tight-lipped Irish-Catholic family) I choose to share my battle with Autoimmune Encephalitis, in hopes of increasing awareness of this little-known disease. I hope that my story can help someone be more accurately diagnosed and lend comfort to someone going through a similar trauma who feels, as I did much of the time, very alone.

Although much of the year leading up to my diagnosis has become a bit of a black hole in my memory, I will do my best to share the symptoms which preceded my admission to the hospital. For months, I teetered between nights where I couldn’t fall asleep no matter how tired I was, even after being lethargic the entire day, to days where I could stay in bed throughout the day. I blamed this on a mixture of depression and anxiety, which at the time I thought may be related to stress at work. I spent days and nights unable to turn off my brain—thoughts racing, tossing and turning. I couldn’t figure out why these feelings were taking control of my seemingly perfect life; I was a 24-year-old, had a great family and friends, a job right out of college, “living the dream” in my North End apartment in Boston. My world felt like it was unraveling. As the title of the now bestselling book by Susannah Cahalan about AE best describes it: my brain was “on fire”.

Fast forward to early February– most people in Boston were covered in snow and still on a victory high from the Patriots Super Bowl comeback. I was waking up in a hospital room with no clue how I got there, why I was there tied to a bed, and tubes coming out of every part of your body; unimaginably scary. I later learned that my Dad had to resuscitate me following my Grand Mal seizure in the middle of the night. I remember nothing of this.

The doctors were unable to get control of the seizures. Over the next few days it was decided that I be put into a medically induced coma. The thought was scary for my family, but the doctors decided it was the only way to stop me from continuous and uncontrollable seizing. After ten days in a coma, I began to wake up; however, it was unclear what damage had been done. Would I regain my memory? Would I be able to walk, talk, and live a “normal” life?

After spending a few more weeks at MGH, and countless tests, I was diagnosed with autoimmune encephalitis – a disease in which the body’s immune system attacks the brain. Although most common in young women, this disease can affect men and women of any age. My body recognized cells in my brain as “bad” cells even though they were good and attacked them – causing my brain to swell for a period of time. As the swelling continued, I began to be more forgetful and confused. The swelling became too much, and the seizures began.

What triggered this attack is still a mystery, but the good news is my body responded well to the IVIG and Rituxan (a form of chemotherapy) treatments. The seizures diminished, and I became more conscious and aware over time. I was then transferred to Spaulding Rehabilitation Hospital where I successfully learned to do small tasks such as hold a spoon, and larger tasks such as walking! After one month there I was released.

One year later, after several more treatments and one relapse, I am acknowledging my current “normal”. Did I think this is where I would be on the verge of 25 – relying much on my parents, not working a “real job”, sometimes spending a whole day in bed, dealing with “bad spells” where I am more inclined to be sad or confused? No. But here I am. I am alive.

Caroline continues to recover and to define her “normal.”

For the past year I have been continuing my recovery at Spaulding Rehabilitation Hospital. The care here has been amazing – both the neurology team, which has followed me since the beginning, and the outpatient therapists who have helped me adopt new techniques to fit my needs following this illness. In addition to individual sessions, I have found the Executive Function Group to be a helpful tool for both learning new tactics to help with some of the activities that I have struggled with, and also as a source of comfort and reinforcement as I listen to and converse with other patients at Spaulding. These group settings were a place where we were able to set and begin to work towards personal goals. Even though the other patients in the group all have different illnesses or injuries it is comforting to hear that other people are having similar experiences. It was these group meetings that inspired me to write this piece in the first place. Hearing other people’s stories reminded me that I am not alone. Sharing my story could offer someone else who has been through a similar experience a sense of comfort that they are not alone in their struggles.

I can remember the doctors telling me to be patient with my recovery. That it could take a year to 18 months to feel “back to myself.” At the time I thought that time frame was unreasonable and that I was going to bounce back right away. I was frustrated at the beginning when I realized I wasn’t exactly the same as before; however, though it did take some time, I have made much progress in the year since my illness. I went from being very dependent on my parents and living at home to getting back to my apartment. I’ve been able to gain more independence in my everyday life and take steps towards getting back to work. Currently, I babysit 10-20 hr per week and have even subbed at a preschool several times. Although it was tough, my recovery revealed what’s important to me and encouraged me to explore my interests. I am now looking at a career change in the direction of early childhood education.

Having an “invisible” illness, I have found, can create a sense of loneliness. People may not be there for you but not because they don’t want to but because they don’t realize the internal, ongoing struggles you are facing. I also hope that when people are reading my post they get a better understanding of my illness.

Some days the urge to give up was so powerful it almost consumed me, but I did not let it. I’m never going to be exactly who I was before AE tried to take my life, but AE will not win. Life is about creating yourself, right? I can see a light at the end of the darkness, I see it get stronger every day. Although there were, and still are, days where I questioned “why me?” And how was I going to get back to my life? I have had to accept that maybe I won’t be exactly who I was before. I have to stop looking at the girl in my Facebook pictures and trying to figure out how I’m going to get back “there.” I was given the gift of survival, and the gift of having a voice to shed light on this little known disease.

When you want to give up, don’t. Look around and see the amazing people that surround you and support you. They didn’t give up on you when you were lying in a hospital bed, so no you will not give up on yourself; I will not give up on myself. Acknowledge the current normal and know that you can and will make progress from here. Start a new chapter, a new story. It’s in your control what comes next. The struggles we go through do not define us, but how we handle them makes us who we are.